Caregiving: The Challenge, Choices, and Love

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BY CHRISTINE SPICER
When 2012 grad Natalie Hamill was 15, her mom, Pam, began to misplace her keys and forget to complete simple daily tasks. As Pam’s forgetfulness progressed, Natalie and her father assumed the cause was something relatively benign like stress or hormonal changes. After all, Pam was only 54 when she got lost on the way to a close friend’s house, struggled to find her way to the salon where she worked as a hairdresser, and became unable to manage her client schedule. The truth wasn’t even on their radar.

It came as a shock when during Christmas break of her freshman year at PLNU, Natalie’s dad led her into a class about how to live with a person with Alzheimer’s disease. When she learned that her mother had been diagnosed with the rare early-onset form of Alzheimer’s, Natalie’s life changed permanently. She quickly made the decision to add to being a college student and volleyball player being her father’s partner in caring for her mom as well.

Family caregiving is hardly ever a planned role. Without training and sometimes without other support, people like Natalie and her dad, who hadn’t expected to manage the care and meet the needs of a loved one, find themselves coping with new challenges and myriad decisions. From assisting with activities of daily living (ADLs), such as hygiene, cooking, feeding, cleaning, medication monitoring, and providing transportation, to making healthcare, housing, financial, and legal decisions, caregiving can mean many things—and often involves increasing responsibilities over time.

There are nearly 66 million people providing care to a loved one in the U.S. according to the National Alliance for Caregiving—that’s almost 30 percent of the adult population. Some caregivers enter into their roles with the birth of an ill or disabled child; others respond to a family member’s illness or injury. With the baby boomer generation aging, more people are finding themselves in the role of caregiver to a parent or spouse with age-related health needs. In fact, those in the largest group, consisting of 43.5 million people, provide care for a loved one over age 50. Nearly 15 million caregivers are in similar situations to Natalie and her father—caring for a person with dementia or Alzheimer’s disease.

 

Caregiving and the Law

Advance Care Planning

For Natalie and her dad, caregiving began almost overnight once Pam was diagnosed. For others, the path to caregiving begins with a few tasks—perhaps help with bill paying or housework—and increases over time. Regardless of the path caregiving takes, one of the most important things caregivers can do is to prepare as early as possible for future needs and decisions.

Dr. Jeanne Maiden, associate dean and professor of nursing at PLNU, has specialized knowledge about end-of-life care.

“I can’t stress enough the importance of advance care planning,” she said. “There really needs to be an ongoing discussion so that the family is aware of the aging person’s wishes ahead of time.”

Advance care planning isn’t just for older people—a serious illness or injury can affect a person’s ability to make their own medical decisions regardless of age. Still, for those who do not already have their wishes documented, advancing age increases the urgency. Individuals who are mentally able now can create a legal document known as an advance directive for healthcare that outlines their wishes. Healthcare advance directives can also make caregiving easier by removing some of the decision pressure from family and friends during crisis situations.

Advance directives for healthcare can be part of a living will or trust. The person making the will can request that certain medical interventions—such as CPR, ventilator use, and feeding tubes—be used or 
not used. Healthcare directives can be updated at 
any time.

Another important step is to create a durable power of attorney for healthcare. This legal document allows a person to name a healthcare proxy who can make decisions on his or her behalf if needed. Such a document can be very helpful for caregivers—especially those who provide care for someone with dementia or a serious, progressive illness.

Caregivers can help ensure that their loved one’s wishes are followed by keeping copies of any advance directives and sharing these with doctors, hospitals, and other professionals involved in their loved 
one’s care.
Conversations about end-of-life care aren’t always easy, Maiden acknowledges, but preparing for the future is worth it. Her advice is not only professional but personal.

Maiden’s 87-year-old mother, Sally, began struggling with forgetfulness and confusion in 2010. Sally had been living alone in Arizona since her husband passed away in 2004. Jeanne obtained power of attorney to help her mother with her affairs, and Jeanne’s aunt, Violet, helped with Sally’s daily needs like showering. Violet gave Jeanne weekly reports over the phone.

Unfortunately, as Sally’s dementia worsened, she grew increasingly frustrated, agitated, and resistant to assistance. Sally began struggling to maintain her hygiene, refused to let in a visitor from Social Services, and racked up several traffic violations. She eventually consented to selling her home and moving into an independent senior living apartment, but she soon became unreliable with taking her medications and received another traffic ticket. Jeanne eventually had to report Sally’s dementia to the DMV so that they would revoke her mother’s license.

Though Jeanne visited often and Violet helped as much as she could, eventually it wasn’t enough. While Sally hadn’t much protested losing her right to drive, she fiercely fought to maintain her independent living. Ultimately, Jeanne ended up having to hire an attorney and earn the right to become her mother’s legal guardian in court.

In September 2012, Jeanne moved her mother into an assisted living facility where Sally’s memory and behavior have continued to worsen. She is often confused and acts out against her doctors and caregivers.
“Even as a healthcare provider, this is personal,” Jeanne said. “The whole dementia process is an extended grieving process; we mourn losses as we go. At some point, you recognize the person you knew is no longer there. You cannot talk to them logically or reason with them anymore.”

That’s why early and ongoing discussions about end-of-life wishes are so important. Though she still deeply needs the support of her immediate family, Jeanne has greatly benefited from having talked with Sally ahead of time, especially as her mother has become less rational and more difficult to care for.

Caregiver Rights

Caregivers sometimes run into roadblocks when it comes to their rights. For example, customer service representatives from utility companies at first refused to allow Jeanne to pay her mom’s bills because they weren’t supposed to grant access to anyone other than the account holder. Similarly, medical personnel may be concerned about violating HIPAA regulations by sharing a patient’s medical information with a family caregiver, but this is actually a misinterpretation of the law. Caregivers have the legal right to obtain health information about the person for whom they are providing care and to participate in the decision-making process. Caregivers also have the right to receive training on how to provide appropriate care for new or changing medical needs.

“You have to be your own advocate,” Jeanne said.

In addition to the right to medical information, caregivers are also often entitled to special services through their local Area Agency on Aging offices. Services might include transportation assistance, minor home modifications (for example, the free installation of safety bars in the shower), respite care, support groups, caregiver skills training, and legal services. In San Diego, for example, Aging and Independence Services provides all of these and several other resources, many for free, as part of its Family Caregiver Support Program.

Finally, some state and local laws provide caregivers with job protection. The federal Family Medical Leave Act covers many U.S. employees and allows up to 12 weeks of unpaid leave for the care of a seriously ill family member. It’s important for caregivers to understand which laws can help protect them and to advocate for themselves accordingly when needed.

Caregiving2Care Facility Options and Finances

Once a parent, spouse, or other loved one’s need for help becomes apparent, the first decisions that often have to be made are about how to best provide care for them. Many times, a person’s living arrangement must change as they develop new needs. The initial decision regarding the ideal caregiving situation may be only the first of several moves needed to keep the care recipient as healthy, safe, and content as possible.

Care at Home

Some people, like PLNU professor of fashion and interiors Dr. Nancy K. Murray, move their family member into their own home. Nancy K.’s mom, Kay, came from Pittsburgh to San Diego to live with her daughter after a heart valve replacement procedure. The mother and daughter had always been close, and for 17 years, Nancy K. was able to meet her mom’s needs at home. After a broken hip in 2009, Kay finally needed more advanced help and moved first into an assisted living facility and then into a skilled nursing home. Nancy K. was her mother’s caregiver for 20 years until she passed away this past January.

Caring for her mother in her home was mostly a blessing for Nancy K., though the shifting balance of their relationship happened more rapidly than she had anticipated. For instance, Nancy K. quickly became the driver and cook for both of them. After a few years, she took over managing her mother’s medications, appointments, and medical record keeping.

“I knew our relationship would change, but I was surprised at how much,” she said.

Another home care option is to assist loved ones in staying in their own homes for as long as possible. This is often accomplished by bringing in extra help such as home care aids, home health aids, or cleaning services. When Claire Buckley, PLNU assistant director of graduate admissions, was caring for her mom at home, she hired PLNU nursing students to assist her mother during the day while she was at work.

Adult day care centers are an option for people who want to keep their loved ones at home but can’t leave them unattended while they work or spend other time away from the house. These centers provide assistance to seniors while offering opportunities to socialize and engage in enrichment activities. The centers can also provide respite care for caregivers who need time to attend to their own needs. Many adult day care centers focus on social activities, but some do include limited medical care. Some also specialize in serving people with Alzheimer’s or dementia.

Assisted Living

Many people choose an assisted living facility or continuing care retirement community (CCRC) for their loved one, especially if they are still working, live far away, or have children at home.

Assisted living facilities provide professional help with medications and basic activities of daily life such as cooking, personal hygiene, and cleaning. There are staff on-site 24 hours a day, but the care each resident receives is not round the clock. Some assisted living facilities provide each resident (or couple) with a small apartment. Others offer single rooms. Most have an 
on-site dining facility.

A CCRC offers independent living, assisted living, and nursing care all in the same facility. Though costs tend to rise when a person moves into a new area requiring more assistance, the advantage is that the resident remains in the same community over time even as needs change.

Dr. Connie Fish, director of PLNU’s Inland Empire Regional Center, chose a CCRC for her father and aunt when they began needing more help. They started in independent living and later benefitted from assisted living.
“I can’t say enough about how great it was to have them in a progressive living facility,” Connie said.

Skilled Nursing Facilities

For loved ones with more needs, skilled nursing facilities, also known as nursing homes, are often the best, or a necessary, choice. In addition to assistance with ADLs, skilled nursing facilities offer higher-level medical care. Patients with chronic illnesses or disabilities or those recovering from a recent hospital stay may do best in a skilled nursing facility.

David Shellhamer (97) is a licensed nursing home administrator currently working at Lindsay Gardens in rural Tulare County, Calif. Shellhamer’s passion in providing care and friendship to older adults began in high school and was nurtured into a career interest while he was the leader of the Elderly Outreach student ministry at PLNU.

“Skilled nursing facilities have dramatically improved over the last 30 years nationwide across the board,” he said. “We are the most heavily regulated industry after nuclear power. Because we are very regulated, we focus on quality; we focus on outcomes.”

One benefit of skilled nursing (and assisted living) is the restoration of some old aspects of the relationship between the family caregiver and the loved one.

“A facility enables the relationship to still have quality time,” Shellhamer said. “Loved ones can go out to lunch or on a Sunday drive together. The family member’s time is freed up from providing daily living assistance and arguing with the person. There can be more enjoyment in the relationship again. One thing I urge people is to never say to their parent, ‘I’ll never put you in a home’ because sometimes a nursing home is the best option for the person and for the relationship.”

Managing the Cost of Care

All the options for care for seniors can 
be expensive.

Caregivers who take an aging loved one into their own home often take on additional expenses related to food, medicine, and transportation. Older adults who stay in their homes still may face high costs if they need home aids and other outside services.

Long-term care insurance may cover in-home health care and assisted living as well as skilled nursing facilities, but this type of insurance is still relatively uncommon.

For many people, the high costs of assisted living must be paid out of pocket. Oftentimes, families deal with this by 
selling the loved one’s home if he or she 
has property.

Medicare does not pay for assisted living. It does cover skilled nursing facilities in limited situations and for a limited amount of time. Medicaid (MediCal in California) covers skilled nursing and may pay some of the costs of assisted living. Medicaid is only available for people with limited resources, so it can be an option for low-income individuals or aging adults who have exhausted their other resources.

More Than Surviving

Caring for the Whole Person

Caregivers’ most urgent concerns are often for their loved ones’ physical health needs—medications must be managed, doctors’ appointments attended, food prepared, and emergencies addressed with haste. Still, making time to meet the emotional, social, and spiritual needs of care recipients is also important.

By encouraging their loved one’s independence in as 
many areas as possible, caregivers can make their own jobs easier while preserving greater self-confidence in the care recipient. Working on projects together, asking for advice in areas where the care recipient might be able to share wisdom, and encouraging hobbies and interests that are still manageable for the person are other ways to support the person’s 
emotional needs.

During Nancy K. Murray’s long tenure of caregiving, she found many ways to uplift her mother’s spirits.

“Some of the best times were when I would interview her and take notes on our family history and her life story,” she said. “I created a genealogy for us, and it was a lot of fun for both of us.”

Nancy K. also interviewed her mom about her health history and created a “medical resume” for her—a project that was highly practical and yet an enjoyable way to talk about the health problems her mom faced.
For Claire Buckley, spending time in prayer with her mom enables the two to grow closer. It also allows Claire’s mother to do something for her daughter even though she has moved from being cared for at home to a skilled nursing facility (with stays in assisted living and the hospital in between).

Encouraging relationships and community is also important for seniors’ well being.

Before he passed away, Connie Fish’s father, who was a pastor prior to retirement, kept up a correspondence ministry throughout his time in assisted living. It allowed him to still make a difference for others despite his physical limitations.

“It’s disappointing to me when I see someone move into a nursing home and then stop going to their church,” said Shellhamer. “Relatives or church members can pick up many residents and take them to church.”
“The biggest help someone can give me,” Claire added, “is to visit my mom or call her regularly. When it comes down to it, it’s relationships that matter.”

Relationships matter for those with Alzheimer’s or dementia as well.

“Sometimes people say they won’t bring the grandchildren anymore once they aren’t recognized,” said Shellhamer. “But it’s still good for grandma to see children and hug them. It’s actually often easier for people with memory loss to communicate with a small child. You can smile and hug, and you don’t need a lot of words. There can still be joy. And it’s good for children to see what’s out there.”

Care for Caregivers

There can be deep satisfaction in making a difference for a loved one in need. Nevertheless, being a caregiver can be physically, emotionally, and financially draining. The risk of burnout and the threat of depression loom constantly for many caregivers.

“It’s important to take breaks so you don’t get burnout,” said Shellhamer. “It’s important to be involved in support groups. We provide formal groups at our facility, but it could also come from a church or wherever else the caregiver is involved.”

Anxiety and depression are more common among caregivers than the general population. Stress, exhaustion, and grief can intensify these feelings. It’s very important for caregivers to seek help if they are experiencing symptoms of depression or burnout. Other advice that may help caregivers includes delegating responsibilities to others; reserving time for rest, other relationships, and personal hobbies; making their own physical health needs—including exercise, nutritious eating, adequate sleep, and medical care—a priority; and addressing their need for support and prayer.

For caregivers of dementia or Alzheimer’s patients, grief at the gradual loss of the person once known can make it hard to find peace even with good self-care. A care recipient with memory loss may not be able to appreciate their caregivers efforts.

For some, like Cathy Gallagher, director of PLNU’s Fermanian Business and Economic Institute, comfort comes from finding what’s right in a situation that can often feel completely hopeless, backwards, and wrong. Cathy moved her father from Florida to California when she learned he had Alzheimer’s disease. He is currently in an assisted living facility.

“The only thing that has given me peace is that he is happy,” she said. “He doesn’t know who I am anymore, but he likes who I am. He’s appreciative, and he is happy to be with me when I visit.”

In the darkest hours, prayer and faith may be the greatest sustenance. Likewise, the loving support of other family members and friends, professional counselors, pastors, and other caregivers can make a tremendous difference.

Saying Goodbye

Watching a loved one pass on from this life to the next is rarely easy, even for Christians. According to research, most caregivers, however, show great resilience after the initial grief at the loss of their loved one. For those who observed great suffering and who had time to prepare for what was to come, finding peace is often easier. Many caregivers even experience a sense of relief as they are released from what were often heavy obligations. This sense of relief is a normal response and not something over which people ought to experience any sense of guilt.

Wayne Blacklock (62) and his wife, Linda, provided care for his stepmother, Margie, from 1998 until she passed away this past summer. Though Margie was able to live independently until 2011, her last few years were spent in and out of hospitals and hospice care due to her severe hearing loss, macular degeneration, and multiple falls and illnesses. When she passed away at 95, the Blacklocks felt peace over what they knew was God’s timing.

“We knew God was taking care of her life and ours,” Wayne said. “We knew she was going to a better place. It had taken so much time and energy to care for her those last few years that we also experienced a release of the strain we felt that we hadn’t even recognized until then. The loss was less emotional for us than it might have been because we know she is much better off now.”

Still, for some caregivers whose identity, purpose, and daily life have been tied up with caregiving, particularly when it has gone on for many years, the loss of their loved one can be especially difficult. For these caregivers, severe depression and emotional stress may follow. It is very important for caregivers experiencing these feelings to receive help. It may be their turn to receive some extra care.
Beauty from Ashes
As Christians, we know that God restores brokenness. He brings light into darkness. And when He is present, from the ashes, beauty arises. Such is the case for Natalie Hamill and her dad.

Within a few months of her mom’s Alzheimer’s diagnosis, Natalie watched as Pam’s condition progressed rapidly from confusion to complete dependence. As a real estate appraiser, Natalie’s dad was able to work from home, and despite her full course load and collegiate volleyball schedule, Natalie went home to help him care for her mother every weekend.

Pam was often agitated during the early months, saying she wanted to go home when that’s where they already were. Though Natalie described her mom as at first being “with them” about 90 percent of the time and “totally gone” only about 10 percent of the time, the balance quickly shifted. Natalie could see a change about every two weeks.

By the time Natalie was a sophomore, her mother was no longer sure exactly who Natalie and her father were; she knew they were familiar and safe, but she could no longer grasp a relationship such as mother-daughter.

“It was hard to be a student, teammate, and caregiver,” Natalie said. “My counselor told me I could continue to go home, but once I was back at school, I needed to really be back.”

Despite the constant trips home to relieve her dad and help her mom with ADLs, Natalie graduated on time in May 2012. Since then, she has been with her mom and dad full time.

“Now, my mom doesn’t know who she is,” Natalie said. “She doesn’t know who we are, if it’s day or night, if she’s hungry. She still speaks a sort of ‘verbal salad,’ but she no longer makes sense.”

During the day, Pam spends her time in what Natalie calls “a mommy-proofed environment,” mostly walking. Pam walks a lot. In fact, Natalie and her dad fitted Pam with a pedometer that shows she walks about 26 miles a day in her house. They put food out for her to graze on as she walks. They take her to the bathroom. They lock the doors at night. When her dad has to photograph properties, if Natalie isn’t home, he takes Pam along. Her dad, Natalie says, is extremely committed to his vow of “until death do us part” and plans to keep his wife with him until the end.

The end is, in fact, drawing inevitably nearer. Natalie guesses her mom might have three years left, but it’s harder to predict with early-onset Alzheimer’s like Pam’s. Though Pam has been at the same stage for a while now, as her disease progresses she will eventually stop walking. She will become immobile. She will forget how to open her eyelids. She will forget how to swallow. And then, Pam’s life on this earth will be over.

But Natalie’s won’t. Natalie and her dad will survive together as they have done thus far. They have grieved Pam’s emotional and psychological loss through counseling. They will grieve her physical loss when the time comes. They have clung to the moments of respite they can find—volleyball for Natalie, golf for her dad. And they have found a shared faith. Injured during high school, Natalie hadn’t heard from many volleyball recruiters. But PLNU wanted her. Since she wanted to play, she said yes. And it changed—in truth, saved—her life.

“My faith has been the only thing to get me through this,” she said. “I gave my situation over to Christ in Klassen [residence hall] in the third floor bathroom. Later, I watched my dad come to Christ.”

And so when her mom dies, Natalie will live. And she will fight. In September, she began a job with the Alzheimer’s Association, working with donors and raising awareness about early onset. She is supporting the organization that has supported her family and fighting for a cure. She knows her own risk for developing Alzheimer’s is higher because of her mom’s experience, but she would make every day count even if it weren’t. From the ashes of heartbreaking loss and heavy burdens, God has 
raised up in Natalie a beautiful, determined, 
and strong spirit. He has drawn her family 
to Himself and promised an eventual end to the pain through an eternal life that will mean complete restoration.

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